Patients’ experiences of disease should be taken more seriously, says study | Health

Health experts say more attention should be given to patients’ experiences after research found multiple examples of their insights being undervalued.

A study led by the University of Cambridge and King’s College London found clinicians ranked patient self-assessments as the least important when making diagnostic decisions.

Ethnicity and gender were felt to influence diagnosis, particularly a perception that women were more likely to be told their symptoms were psychosomatic. Male clinicians were more likely to say that patients overplay symptoms.

The findings prompted calls for clinicians to move away from the “doctor knows best attitude” when caring for patients.

One patient shared the feeling of being disbelieved as “degrading and dehumanising”, and added: “I’ll tell them my symptoms and they’ll tell me that symptom is wrong, or I can’t feel pain there, or in that way.”

The study was published in the journal Rheumatology. Researchers used neuropsychiatric lupus – an autoimmune disease that affects the brain, spinal cord or other nerves – to examine the values given by clinicians to 13 different types of evidence used in diagnoses. These included evidence such as brain scans, patient views, and the observations of family and friends.

Fewer than 4% of clinicians ranked patients’ self-assessments in the top three types of evidence. Clinicians ranked their own views highest, despite acknowledging they often were not confident in diagnoses involving often invisible symptoms, such as headaches, hallucinations, and depression.

Dr Melanie Sloan, from the department of public health and primary care at the University of Cambridge, who is the study’s lead author, said: “It’s incredibly important that we listen to and value patients’ insights and their own interpretations of their symptoms, particularly those with longstanding diseases – after all, they are the people that know what it is like to live with their condition.”

Almost half (46%) of the 676 patients reported never or rarely having been asked for their self-assessments of their disease, according to the study funded by the Lupus Trust and Lupus UK.

Others spoke of very positive experiences. Some clinicians, particularly psychiatrists and nurses, valued patient opinions highly.

A psychiatrist from Wales said: “Patients often arrive in clinic having had multiple assessments, having researched their own condition to a very high level and having worked hard to understand what is going on with their own body … they are often expert diagnosticians in their own right.”

The researchers acknowledged that patient reasoning would be inaccurate at times, but concluded there were likely to be many potential benefits such as diagnostic accuracy, fewer misdiagnoses, and greater patient satisfaction if they included their insights into decisions about diagnosis.

Dr Tom Pollak, a senior author on the study from the Institute of Psychiatry, Psychology and Neuroscience, King’s College London, said: “No human being is always going to be able to accurately pinpoint the cause of symptoms, and patients and clinicians can both get this wrong.

“But combining and valuing both views, especially when the diagnostic tests aren’t advanced enough to always detect these diseases, may reduce misdiagnoses and improve clinician and patient relationships, which in turn leads to more trust and more openness in symptom reporting.”

Sue Farrington, co-chair of the Rare Autoimmune Rheumatic Disease Alliance, said: “It’s time to move on from the paternalistic, and often dangerous, ‘doctor knows best’ to a more equal relationship where the patients with lived experiences and the doctors with learned experiences work more collaboratively.”


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